Y90 AND Captem Combo

Posted by laree @laree, Jun 26 12:26am

Pnets KI67 25%. My husband had 3 captems cycles. The last cycle had toxicity and became sick. Anyone experience Y90 procedure for Pnets mets to the liver? I have read many net patients use Captem to shrink tumors for a few cycles. Not sure why the Dr wants to dive into Y90 already. Unless it is because my husband got sick the last cycle of Captem. But didn't use anti nausea meds either, unfortunately. Anyone have good results with Y90 and was successful?

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Profile picture for lindabees @lindabees

I totally sympathize with your situation. Its frustrating to not have the answers you need. But it is important for you to understand what is being recommended or not recommended so you need to ask these questions and insist on an answer.
Also, it's very important to educate yourself as much as possible so that you feel comfortable if what the doctors - even a specialist- tells you makes sense or not. Had we relied on a top net specialists opinion of no options for my husband 17 years ago he would not be alive today.
Fortunately there are many net specialists in California. That is where my husband's journey began and we saw many of them. A second opinion may be helpful for you. Cedar Sinai in LA has an excellent net team and an excellent net surgeon, Nicholas Nissen. Other great options are City of Hope, UCLA and Stanford.
Many years ago a well renowned net surgeon referred to surgery and liver directed therapies like y90 in this way. You're Cinderella and it's 11:55 pm. You tackle what you can of the tumors and you've set the clock back to 7 pm.

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I am surprised that the first net specialist you met didn't offer any treatments for your husband? So he did have surgery on the primary location? I hope for the best for everyone with this disease.

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Profile picture for laree @laree

I am surprised that the first net specialist you met didn't offer any treatments for your husband? So he did have surgery on the primary location? I hope for the best for everyone with this disease.

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Actually he had already had his pancreatic primary removed by a net specialist surgeon at Stanford. We sought out this other N Ca. Specialist to get a 2nd opinion as to how best treat the liver mets.

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Profile picture for laree @laree

Thank you for the references. It might be a good idea even if it was by a zoom call for second opinion. But I do trust the net specialist so far. I told my husband wr have to get all questions answered before all the small talk. Lol

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Trust but verify is our motto😊

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Anyone start this treatment? With good results? My husband has PNETS G3 KI67% 25%. There is a clinical trial stating it has worked well.

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Profile picture for laree @laree

Anyone start this treatment? With good results? My husband has PNETS G3 KI67% 25%. There is a clinical trial stating it has worked well.

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I have pnets pancreatic primary many liver tumors they are functional gastrinomas grade 2 ki67 7% based on your husbands grade it sounds reasonable to me. I started lanreotide injection immediately that only controlled symptoms! Then about a month later did 7 months of Captem which I did not respond to. Then had y-90 on both sides of the liver which worked very well! I am pretty sure it won’t be fun to get them together but 25% is fairly aggressive as far as I know so it needs to be treated accordingly. I would definitely agree to it. I assume you have a pnet specialist that is part of a multidisciplinary team? Where is he being treated?

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Profile picture for laree @laree

Anyone start this treatment? With good results? My husband has PNETS G3 KI67% 25%. There is a clinical trial stating it has worked well.

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Yes, we are going to UCSD for treatment. It appears that it is a 5yr clinical trial. The percentage is what I am concerned about for KI67. But there hasn't been enough time to track how fast growing they are. He is stable right now. On the 4th cycle of Captem. Nonfunctional Pnets. I don't know if the pancreas will be able to receive surgery or not, in the body of the pancreas. For right now not eligible. But it sounds like Y90 is hopeful. It also sounds like sort of a whammy to have both done at the same time. I hope it all works out for the better. It will probably be in the 5th cycle.

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Profile picture for laree @laree

Yes, we are going to UCSD for treatment. It appears that it is a 5yr clinical trial. The percentage is what I am concerned about for KI67. But there hasn't been enough time to track how fast growing they are. He is stable right now. On the 4th cycle of Captem. Nonfunctional Pnets. I don't know if the pancreas will be able to receive surgery or not, in the body of the pancreas. For right now not eligible. But it sounds like Y90 is hopeful. It also sounds like sort of a whammy to have both done at the same time. I hope it all works out for the better. It will probably be in the 5th cycle.

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How is the captem being tolerated? I was on it for 13 cycles.

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Profile picture for laree @laree

Anyone start this treatment? With good results? My husband has PNETS G3 KI67% 25%. There is a clinical trial stating it has worked well.

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Well, I had probably explained in another thread. He was fine the 1st 2 cycles and used 0 nausea meds. Which I wasn't thrilled about. 3rd cycle starting Tem he did get really sick It might of been a combo of stress at work, working in the sun and no nausea meds taken. I had to take him to ER. He experienced severe pain with Gastritis, colitis and esphogoitis It has taken some time to heal. Now, he is taking nausea meds as a precaution. We don't want to go through that again. So I am hoping he can tolerate it.

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Profile picture for laree @laree

Well, I had probably explained in another thread. He was fine the 1st 2 cycles and used 0 nausea meds. Which I wasn't thrilled about. 3rd cycle starting Tem he did get really sick It might of been a combo of stress at work, working in the sun and no nausea meds taken. I had to take him to ER. He experienced severe pain with Gastritis, colitis and esphogoitis It has taken some time to heal. Now, he is taking nausea meds as a precaution. We don't want to go through that again. So I am hoping he can tolerate it.

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Now I remember that he didn't take the nausea meds. Lesson learned. Most of us do get a little sick especially while taking temozolomide. The captem will make him tired. Is he making it a point to get plenty of rest?

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Profile picture for laree @laree

Anyone start this treatment? With good results? My husband has PNETS G3 KI67% 25%. There is a clinical trial stating it has worked well.

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@laree
That sounds like a really interesting and promising 2 punch approach, especially considering 25% ki67. It sounds like the captem is starting out well with stability and y90 can be super effective on the liver. My husband had y90 done 12 years ago when he had a 50% tumor burden in his liver and it killed most all of them and kept the rest stable for several years. My husband has also done captem recently with good results. (Pnet primary)

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